63. Shining Your Light with Gigi Robinson

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00:00
Gigi Robinson
That's just kind of why I'm so passionate about it, just to help people through what I've learned. Kind of like, if I've gone through it, I don't want other people to and it kind of makes it worth it for me. Net Positive. 

00:25
Jennifer Milner
Welcome back to the Bendy Bodies podcast, where we speak with experts bringing you state of the art information to help you improve your well being, enhance your performance, and optimize career longevity. This is co host Jennifer Milner, here with the hypermobility MD linda Bluestein. 

00:38
Dr. Linda Bluestein
We are so glad you are here to learn tips to live your best Bendy life. This information is for educational purposes only and it's not a substitute for medical advice. 

00:45
Jennifer Milner
I'm Jennifer Milner, a former professional ballet and Broadway dancer, and I struggled my whole career with hypermobility related injuries and issues. Now I train dancers and want to make sure the next generation of hypermobile artists are better equipped to work to their fullest potential. 

00:59
Dr. Linda Bluestein
I'm Dr. Linda Bluestein and I started Bendy Bodies to educate the hypermobile community. Despite being a physician, I experienced decades of symptoms before being finally diagnosed with hypermobile Eds. I've combined my medical education and personal experience to treat and coach patients and clients to optimize their quality of life. 

01:14
Jennifer Milner
Our guest today is Gigi Robinson, content creator who is passionate about using her platform to raise awareness for Eds and chronic illness. Gigi's podcast, Everything You Need Is Within, discusses body image, chronic illness, mental health and identity from a gen z point of view. Hello, Gigi, and welcome to Bendy Bodies. 

01:30
Gigi Robinson
Hi. Thanks for the intro. 

01:32
Jennifer Milner
Absolutely. 

01:33
Dr. Linda Bluestein
We're super excited to chat with you. 

01:35
Gigi Robinson
I'm excited to be here. You're both really cool and it's really fun to be interviewed by people like I said before, who I haven't been interviewed by, with unique and somewhat similar backgrounds as well. 

01:48
Jennifer Milner
Well, we are excited to dive into it. So before we go any further, can you tell us a little bit about who you are now, sort of what you do now? 

01:54
Gigi Robinson
Yeah, I like this question because it's about being in the present. Well, I just finished my master's degree less than a month ago, so today I guess you could say I'm like a full time public speaker and content creator. I have been doing it full time, but in addition to school part time, so at night. And so I think right now, I'm just doing a lot of public speaking and advocacy working with different nonprofits and speaking to different companies and different organizations and partnering with different brands that want to help me curate. Spaces for creators that are safe, where they can talk about things and not create content, or create content at their own just to have fun and shoot photos with friends instead of going to an event for the sole purpose of taking photos and posting photos. You don't always have to do that. 

02:47
Gigi Robinson
And so I think it's really cool that's what I get to do and that's what I'm working on this year. 

02:52
Dr. Linda Bluestein
That's awesome. And there's so many things we want to discuss with you today, but let's start with your medical journey. You've said that you were diagnosed with Ehlers Danlow's Syndrome when you were only eleven and what led your family to seek medical help at that age? 

03:04
Gigi Robinson
Well, there's a few things, but luckily I live in New York City, so I grew up with incredible health care around. Like, my mom's a nurse, so I had great healthcare benefits or insurance through her. And I have one more year left. A little bit worried about that, you know, just like being around that. I think always was trying to ask a friend, where should I go? What should I do? And then I kept getting random injuries and I grew up with bruises, but everyone just felt like, oh, she's just really clumsy, which I am. But at the same point, bruises still can appear and I'm like, where did they come from? And so at certain points, they just kept bringing me to the doctor. And I think my mom told me that at one point when were in the, like, one of the attendings was from the hospital for Special Surgery right next door to New York Presbyterian. 

04:03
Gigi Robinson
And so that doctor recommended we go see the pediatric orthopedist there who they were working with or learning from. And that doctor took her like two visits for her to figure it out. And then, well, yeah, it doesn't stop there. But that was like the first then I would say it was like, go to a geneticist, go to this Rheumatologist, go to blah, blah, just to confirm the diagnosis. And it was. But I think it's really interesting. I literally just recently, in 2022, like a couple of weeks ago, had the surgery, the laparoscopy to see about endometriosis. And it's really interesting. I don't know if there's studies that correlate eds to it or not. I see her smiling, so maybe you know something I don't. But I think reflecting on it now, it's kind of frustrating to think that I've been searching for additional answers as to why I always have had this stomach pain or bad back pain or why does this exist? 

05:11
Gigi Robinson
And now I have the answers 13 years later and it's kind of frustrating. But I'm hopeful. I think. I think that's a good word in terms of my own health. What I want to do is help others get there now. So anyway, that was a little bit of a full scope. 

05:31
Jennifer Milner
Well, and it's important to note, too, first of all, a lot of our listeners will start the story with I knew something was wrong early on, right? But not everyone is as fortunate to get diagnosed as you were so early. So that's really fantastic. And it's going to continue to be a journey as you know, it's taken you 13 years to know what you know now. Ten years from now, you're going to look back and go, oh my gosh, I learned so much more in the next ten years. So it's that gift that keeps on giving. It's that onion that's never completely peeled. 

05:56
Gigi Robinson
Yeah, the onion, exactly. I love that analogy. Yeah. 

06:03
Dr. Linda Bluestein
And the endometriosis question is an interesting one. A lot of people in the Eds space suspect that there is a correlation, but it's hard because endometriosis is quite common and definitely under diagnosed as well. And we know that Eds and endometriosis are both things that occur more in females, or at least these are things that we see in females. So it's harder to actually make a correlation between two things that are more common than two things that are more rare. So in terms of, like, statistical analysis and finding a study and things like that, but we do know that masked cells can be involved and we know that masked cells can be involved with Eds. So there's that connection anyway. 

06:41
Gigi Robinson
Absolutely. Yeah. My doctor basically said the same thing. She was like, I can't say yes and I can't say no, but I have seen a bunch of women with Eds also have this. So I think also that was reassuring too, that there are actually at least people that it's not like, oh, just like your random person who might not have any other health issues all of a sudden just has it. But something I wanted to say earlier on the note of some of your success recently in being in the news and everything. Talking about Eds is kind of like what happens when it's over diagnosed or not over diagnosed. But now it's so common that it's like, finally it's getting the press that it deserves, but it's still hard to make people around you understand fully what you're going through. And I just felt like that wasn't something important to bring up because people sometimes are just like, oh, yeah, I have a friend who'sick or my mom's sick, and it's like, yes, but this is hard to explain. 

07:43
Gigi Robinson
Yeah. 

07:44
Dr. Linda Bluestein
And that's something that we hear a lot. And I think one of the goals of the podcast for sure, is to help people feel less alone. And we get that message all the time from people that they do feel less alone. And feeling alone is a bad feeling and it's really hard. So whether it's like you said, whether it's endometriosis or you have symptomatic joint hypermobility from whatever cause, because we try to also keep the conversation from that standpoint, like really broad, because of course there's people that listening to this that are going to have symptomatic joint hypermobility for another reason. Right. But it is I think it's really hard sometimes if people have not walked the walk, it's really hard for family and friends to understand what it's like to live in a body that just doesn't behave like other people's bodies. Which leads me to wonder, how did your being diagnosed when you were eleven, how did your health affect your choices through high school and beyond? 

08:40
Gigi Robinson
Yeah, this is like a question that I think about a lot. I recently watched the Lizzo documentary on HBO Max. It's called love, Lizzo. And very early on in the film she says, life doesn't take you very far from where you're supposed to be. And I really thought that was a beautiful quote that she had said. Especially because it doesn't negate or dismiss. Everything happens for a reason. It's just kind of like some things just happen and as a result you're going to go somewhere and it's where you're supposed to be no matter what, even if it's painful or hurts or upsetting. And so when I was diagnosed with Eds, I actually was doing competitive swimming and I was actually really good at guess what? Stroke? 

09:32
Dr. Linda Bluestein
Butterfly. 

09:35
Gigi Robinson
And it's like nobody's good at butterfly naturally and you have to train to be good at butterfly. I just could rotate my shoulders so quickly. And I remember this was after I'd fractured my elbow first and then I had fractured my ankle and then I had to kind of stop around then. And my doctor said, if you keep swimming, you're going to have issues, so you should just stop while you're here. And I'm like eleven. I'm like growing up, I haven't even got my period yet. I don't know how am I supposed to stop doing the thing I love? And so I end up just doing something else, which was art. I always liked art. I was always a crafty girl. But I had picked up my dad's camera and I started just documenting as much as I could and making art and using that almost as my escape. 

10:25
Gigi Robinson
If I could learn something else and I could get really good at something else, then maybe I would feel accomplished or better or just even the sense of learning almost became addictive to me because it helped me focus on something other than how I was physically feeling. And to be honest with you, that has lasted all the way up until three weeks ago when I just finished grad school. So this is like a very real thing that I'm actually dealing with now to this day is this entire realization of like I was using school to dismiss my health issues and my hobby even became that too. And so it just became really something that I, I loved. I loved telling people stories and doing something that was not about me. And it wasn't until I got to college really, that I dealt with ableism from my teachers and things like that and my friends around friends where they just didn't understand. 

11:32
Gigi Robinson
And I went to the University of Southern California, which is 3000 miles away from New York City, and everything I knew and my doctors and had to get reacquainted and explain myself and go through doctors that didn't understand Eds, that said they did online, or so on and so forth. And so it was really, once I went through that I realized, although I had a diagnosis, I didn't know how to stand up for myself and really advocate for myself. Because it was like, I already have a diagnosis, what else is there to do, right? And so as I went through those experiences out there, I think I really learned a lot about communicating. Knowing what I need to communicate, knowing how to communicate it, knowing what's something that's me being ridiculous versus what's something that I wouldn't want from a friend or a partner or a teacher even when do I seek that extra assistance from the disability office. 

12:27
Gigi Robinson
And as I was doing that, I was building my social media. And eventually I ended up sharing my art that I was making. I was documenting people with EDF in the local EDF support group area for a project because a teacher didn't believe me. So I was like, you better now? Let me show you exactly. And then I did a series of self portraits at the hospitals. Like I would literally sneak my camera in my backpack into the hospital. I don't know if this is legal or not. I always like, okay, I talk about this very lightly, but I brought my camera and I took photos inside the office of myself there, and those were my critiques. And I did color studies. And as I did that, it was a form of validating my experience. And from that it helped me have, I think, the power to talk about it. 

13:18
Gigi Robinson
And as I talked about it in person, I also talked about it online. And that's really where it got me to where I am doing what I'm doing today. 

13:25
Jennifer Milner
That's so interesting. It's almost like a full circle. A lot of people talk about hitting that Eds wall. Like, they're great, they're great until they're not great. But it sounds more like you hit a preemptive wall when you were eleven. And the doctor was like, well, you should know, you should just quit now. Which may not have been as harsh as the doctor said it, I don't know, he may have been much gentler, but to hear something like that preemptively, and you to think, okay, well, I'm going to figure out a workaround. And you started pursuing something that in a sense didn't require you. You said you were documenting other people and looking at other things and creating art that wasn't so dependent on you physically, and yet it came around in this wonderful full circle to be the art, was sharing yourself in a very authentic way to educate others. 

14:05
Jennifer Milner
So it's really interesting how you sort of grew into your diagnosis without really losing your stride. And I'm sure it was much more difficult than that and there were ups and downs, of course, but just that as you grew into it, so did your voice. And I think it's really interesting what you said. You said although you had a diagnosis, you hadn't really learned how to stand up for yourself and advocate for yourself. You did grow up in a very wonderful bubble of knowledgeable people and medical people in your family that were able to advocate for you and stepping out. You didn't just have to learn how to cook more than ramen noodles or whatever most college students do, but you had to learn, oh, some people won't take my diagnosis and go, oh, okay, I understand that means I need to XYZ. You had to educate them. 

14:50
Jennifer Milner
So that's really yes, it is. But that's such an amazing burden of that time. One of the hats, one of the many hats that you have worn is that of a swimsuit model, also an advocate for body positivity. So did one thing encourage the other? Did you get a lot of feedback? Do you get a lot of feedback from teenagers struggling with body. 

15:14
Gigi Robinson
Mean? I I think, you know, when I saw this one girl win with Si, she was from USC and I had met her, I'd met her before this at college, and I was like, oh, super cool, whatever, and she won it. I was like, when that happened, I was like, if it's possible for her, it's also possible for me. So why not? When somebody does something, especially if it's within your reach, it makes almost like a dream truly reality for other people, I think. And I think that's like a cool way to look at competitions in some ways because that's really what it was. And so I entered an open casting and I just knew that I didn't want to do it for any reason because I think Si is a very body positive network for the most part, and they have been pretty inclusive of different body types with the exception know disability and chronic illness. 

16:17
Gigi Robinson
And I saw a lane and an opportunity to use my story to help other people. And when that whole thing went down and it was announced, I can't tell you the amount and the number of messages that I received from people being like, I feel seen for the first time ever that you are the person that's there representing us. And that was the point. That was the whole point of doing that. Yes, it was about achieving Si status, but I don't model full time. That's not my life work. My life's work is helping people and what better way to do it? And also help people with body positivity, specifically people who maybe can't always work out. I did this one interview during that time, it was with the US Sun and it was on what I did to prep for the shoot. And I really liked this interview because she asked me questions about like, well, did you go get body sculpting or work out or change your diet? 

17:35
Gigi Robinson
And I was like, no, I didn't. And the reason is because, one, that's not who I am, but two, I don't have the spoons. I'm good just as I am, and I know that. And if I physically had pushed myself, I would have felt miserable and I would have not performed my best. And I think just that in and of itself was enough to recognize that. And talking about that was really important to me. So that was another part of the message of going and doing it and not like, did I get a facial and a spray tan? Yes, I did, but that was because I wanted to treat myself. It was an exciting shoot, but that wasn't body altering. So, yeah, that's just a little bit more on that. That's awesome. 

18:26
Dr. Linda Bluestein
Now, in case someone has been living under a rock and maybe isn't completely familiar. So, Si, you're talking about Sports Illustrated, right? Swimsuit Edition? Can you maybe just back up slightly? And like I said, for those two listeners, maybe you're like, I'm not sure what she's talking about. 

18:43
Gigi Robinson
Yeah, so there's this thing that they have every year. They've had it the past couple of years called the Swim Search, where they basically have an online open call casting for anybody that wants to they call it like being who's hopeful of getting into the magazine. And again, it really wasn't about doing it for the sake of getting into it. It was doing it for the sake of spreading a mission. I literally felt called to enter it, and I just did it. I just went for it. And I think it was also really cool because it helped me raise awareness for Eds and it got a lot of would. I've been in Glamour, allure New York Post, US Sun, Fox News. I mean, pop sugar left and right about this. And I think it's just like I was just like, if the world needs me to be the Eds girl, then so be it. 

19:40
Gigi Robinson
I will help people this way. And it's just been great to see other people kind of message me, just saying, I just wanted to let you know I felt seen by this. I have some questions about Eds. And then I can say, you know what, now I'm at the point where I'm not a doctor, so I'm not going to be like, yeah, blah. I'm just like, oh, that's really great that you might think that I suggest going to a Rheumatologist or like a geneticist or whatever kind of doctor it is. I, at the very least, have my medical lived experience to be like, oh, yeah, I can go and hopefully point someone in the right direction, but not necessarily with medical advice, and just help people feel like they at least have, like they can start at the starting line instead of training for it. 

20:28
Gigi Robinson
I've been training for the marathon. I've already ran it. I'm prepping for the rest of the marathons that I'll run in life, but I want to help people at least get to the starting line. 

20:41
Jennifer Milner
And that's just something that is not found, like in textbooks or whatever. It's just part of who you are. And it's just fantastic that, like you said with Lizzo, life doesn't take you very far from where you're supposed to end up. It's great that this is where life has taken you and you are able to use this so much. Your advocacy is framed sort of from a Gen Z point of view, which I love. I have two Gen Z daughters, so they are very outspoken and I'm extremely proud of that generation for learning to have a voice and for being as passionate. I think that Gen Z gets a bad rap a lot of time. And on your website you recently posted the question, if you knew you could change the way Gen Z grows up, would you? So where did that question come from in your life? 

21:22
Gigi Robinson
I think the question came up because during COVID I think specifically is when most Gen Z adults were entering the workforce and there was a lot of conversation happening about how Gen Z is like a snowflake or Gen Z is too emotionally unstable or soft or can't handle stress or whatever kind of weird commentary the world had about the generation. And I thought, why aren't leaders focused on helping the next generation? And instead they're just criticizing it. How weird is it that older generations are more interested in being like, you are lazy and I'm mad about it, instead of being like, hey, here's some things I think could actually be a consideration to help shape the workplace or jobs or school or whatever better. Or in addition to that, just like my own experience in college and how I dealt with teachers was like, if I could help other younger people deal with teachers that way, then maybe they can have a better adulthood. 

22:39
Gigi Robinson
And so it was both of those things that I was feeling, and I'm still amazed at how the older generations in workplace are so quick to just point a finger at Gen Zers and just say, you guys are just lazy. And there's two considerations I would bring to the table, one of which is, like, we are a digital generation and we've lived under different communication styles than any generation before us. Not to say that's a good thing or a bad thing, it just is. And the second thing is it's really the leadership at these companies that's supposed to be open, and we're just like the new kids on the block. And so why is it that you're getting mad at young people entering the workforce? It doesn't make sense to me. You were once there too, and I'm sure there were older people before, saying that about those generations before. 

23:35
Gigi Robinson
So, yeah, I really thought that was like an interesting kind of reframe on just what I was observing around me, and if I could help facilitate that, then that would be enough for me. 

23:49
Jennifer Milner
You're facilitating a lot of things, so that's just one more. But what I find interesting in today's climate, so much of it and there was an article in the New York Times recently about how 2022 was sort of the year when it just went too far. That it's just everybody's mad, everybody's yelling at each other, and some things are just going beyond irreparable with relationships and things like that. And so much of what we do on social media and online is to argue without listening. A lot of gen zers bless them. Like, people will say, hey, Gen Z Snowflake and gen zers will be like, no, we're not. And you're like, Why do you feel that way? And what can we do to change that? What could you do to support us? So it's not just being on the other side of the argument, but you're going, hey, let's fix it. 

24:34
Jennifer Milner
Which is really amazing. Not that a lot of gen zers don't do that, but amazing to see someone see that at such a young age and be able to say, hey, let's deal with this. 

24:43
Dr. Linda Bluestein
And I feel like you have done. 

24:44
Jennifer Milner
That with your advocacy for Body Positivity, your advocacy for Eds. There's so much of that you kind of take on, and I think your generation has been speaking up because you are so tech savvy, because were in isolation for a year and sort of using that, and there was so much social justice going on as well. But it's really amazing. And I just have to ask, was there any support or pivotal person in your life that sort of mentored you or showed you that way of facilitating and mentoring others? 

25:14
Gigi Robinson
Yeah, this is like a fantastic question. I have said this before, but I grew up in a Tony Robbins household with some Tony Robbins fans, and I think if there's anything I've learned from that, it's like, you don't need to take every piece of the pie from a certain kind of learning. So is he 100% right? No, I think there's some things that don't resonate with me from his teachings, but that's okay. And something I did leave out also of my medical history is I really did have a mind over matter situation where I was like, oh, it's going to get better if I just do PT or if I just ignore it or distract myself. And I didn't take medicine until August of 2021, and so it's still relatively new in my life, and only good things have happened since. I kind of accepted that. 

26:09
Gigi Robinson
But I think part of it was just trying to always have a positive reframe on things, but something that also is important is like acknowledging that you can still feel sad about the situation, but you can choose to also have a reframe on it. You can choose to have a positive thought. And honestly, I just like feeling happy more than I like feeling sad. And so part of it's just like me, and part of it's just like I've gone through a UPW before, which is Tony Robbins basic conference and I resonated with a lot of it. I thought it was really great to go through it. And I love all of these motivational speakers like Mel Robbins and Gabby Bernstein and know I listen to all of them here and I just I think there's so much sad, negative stuff. And also on the note of Gen Z just being so quote unquote, snowflakey, it's like we're thinking about is it even worth it to buy property now because the economy is so bad or because our house could get destroyed in a natural disaster? 

27:19
Gigi Robinson
Or is it going to be a safe climate in 50 years? I don't know. So I think our generation is really the generation that's going to see the decisions of older people out. And that's really scary to think about. Kind of like the demise of life as we know it. And is that going to happen in my lifetime? I don't think so, but it's kind of inevitable. We're seeing natural disasters and record breaking heat and cold and it's like a scary thing to think about that I think a lot of us are almost paralyzed by because we're so connected to our phones digitally and we're receiving so much of that information, it's almost like we don't even have permission. It's just like it's coming towards us through our feed. We're scrolling. It's not something we chose to look at or turn the news on and see it. 

28:11
Gigi Robinson
It's just there and it's integrated into algorithms now. It's not even something that we literally don't have the choice to see. So when I think about that and have conversations with my friends about the serious stuff, the only thing I'm thinking about is how can we just think about positive things in these moments? 

28:33
Dr. Linda Bluestein
We are living in some really heavy times. And I think it's great that you're speaking about mental health, especially because for your generation, it's nothing like what I went through when I was a young person, for sure, and generations older than me and everything. So it is a lot. And I think it's wonderful that you are advocating not just in terms of chronic illness, but also mental health issues and how did that become something that you wanted to speak about? 

29:03
Gigi Robinson
Yeah, I think that body image, mental health and physical health are all connected. I mean, they are it's not even that I think that they are right, especially for people who live with chronic health conditions, especially for at least every person who has Eds. That I've talked to. You can't work out because you don't feel good, or you're scared that you're going to push yourself and hurt yourself. Or you do that and you've done it one too many times, and you take one step forward and five steps backward so you don't work out. And then you either get negative comments or you feel bad, and then you feel bad about yourself in your mind. So then you're not motivated to work out or do anything that's productive. And so then it's just like a cycle. And then you're like, fine, I'm going to start it. 

29:48
Gigi Robinson
And you almost like, binge. You just push it too far. And I feel like that's like it's like you're trying to compensate. I can never just start and do it at 20%. It's got to be like, if I'm doing a yoga class, I want to be able to do it all. And if I'm just like, I start it, and then I can't continue the flow, then I'll get sad and I'll just sit there and meditate, and then I'll feel sad that I didn't go through it. And so it's all connected. And that was, again, part of the reason why I took the stance that I did with Si. And no retouching and no going crazy with the workout or the diet or anything. I think also with Eds specifically, I've had a lot of issues with eating because I've just had stomach issues. Doctors can't even explain what makes my stomach mad. 

30:39
Gigi Robinson
I've tried everything from a low FODMAPs diet to going completely vegan at times, to not eating anything inflammatory or night shades. Just ridiculous everything. And while eating on a vegan diet gives me less acid reflux maybe than others, I still get sick from eating lettuce sometimes. Like, a salad will just trigger me sometimes. So it's like, I can't win here. And then I'm like, what is wrong with me? In my mind, I feel bad. My brain's bad, and now I'm getting body dysmorphia because if I eat, I'm sick, and if I don't eat, I'm hungry and feel sick. So what's the medium? And so I think that's kind of a big thing that I dealt with. And then just also the mental pressure of what happened in college, where the people that I was literally paying to be in their classes for college were saying, you're just copying out. 

31:34
Gigi Robinson
You're being a lazy student. I don't believe you. This one was my favorite. The teacher said, I don't believe that this is the real Office of Accessibility portal. Like, you had to have Photoshopped this. And I'm like I'm literally showing you. You think I'm going to go out of my way to code a website to fake needing to use my computer for notes? I have a 504 disability accommodation. Why are you behaving like this? As a grown ass adult, it's just embarrassing for them. But in that moment, I didn't know how to say, take it up with the other person. I don't know what to tell you. Why would I lie about that? And it's also a matter of, like, if I did say something, would it jeopardize my grade? And students deal with this a lot. And so over the past two years, it's just been really great to help a lot of students. 

32:25
Gigi Robinson
And especially, you know, I had someone on my team for a while who had chronic health issue, and I was able to help them write their letter to their teachers about sorry. I was able to help them write letters to their teacher about needing the accommodation and what to put in it and the language to use and how to instead of writing it in a way that's like, would it be okay? Or I just kind of wanted to say that this might be what I need. Or if you notice I'm not there, it's like I have a health issue, and sometimes I need to take the time off. It's like one is kind of like explaining yourself. One is asserting yourself. And when you have a health issue, you have to assert yourself in the school situation or else the teachers won't be receptive back. 

33:14
Gigi Robinson
And so, yeah, that's just kind of why I'm so passionate about it. Just to help people through what I've learned. Kind of like, if I've gone through it, I don't want other people to and it kind of makes it worth it for me. No positive. 

33:27
Dr. Linda Bluestein
Right? And paying it forward like that is such a huge I remember a therapist asked me many years ago, can you see any positive in what's happening to you right now? And I remember being kind offended by the question, like, no, my life's falling apart. I'm in pain, 24/7, all these things. But later, looking back, it's like, I've obviously been able to take all these things that happened to me and use it to help other people. But at the time, it can be really hard to view it that way. And to me, the college student thing especially is hard because they're adults. They're grown adults. You're not talking about elementary school kids or high school kids or whatever. They're adults. And I was curious to ask, how do you manage your daily life in a way that you are able to take into account your chronic issues and also pace yourself? 

34:19
Gigi Robinson
Yeah, thanks for asking this great question. Something that's been really helpful for me has been my integrative wellness doctors. And I think something to note that's very important is, like, you're allowed to be able to use Eastern and Western medicine. It doesn't have to be a whole, like, I'm going the holistic route and that's it. It's like I just got diagnosed with endometriosis, and I don't have a choice but to be on an IUD or birth control of some sort to help manage that. I don't have a choice with my pain but to be on Lyrica to help me feel and perform my best right now. And for my chronic migraines and for my nausea, I'm allowed to use all these medicines that have been developed in the Western world. And I'm allowed to go to Acupuncture and get different kinds of herbs and follow an Ayurvedic diet and life practice of eating at certain times and meditating and also getting massage therapy. 

35:24
Gigi Robinson
And you're all able to do it in tandem. And I think working with an integrative team, like, if anyone listening out of this has any question at all if they should go see somebody who's really, truly open and experienced integrating different things, it's about what's going to help you the most. And for me, it's a little bit of both, and that's okay. So recognizing that and working with those doctors, second to that is those specific doctors are like, sleep is one of the most important things that you can do. And in the past I've had trouble with that because of school, my degree was pretty much remote and it was hybrid, but was remote, and I was doing West Coast hours on the East Coast at night, so it was like I was up until 1230 and I had to be on and I couldn't shut off. 

36:14
Gigi Robinson
And I love waking up early in the morning. I feel my best, I feel energized, I feel like I have productive days when I'm waking up really early and I just wasn't really able to do that for the past two years, and I wasn't able to do that in college. And so I think recognizing that and realizing that, oh, now's, this time in my life where I'm finally going to actually be able to regulate my sleep for once and hopefully stick to it, I'm excited about that. I'm really excited about committing to different things now that I have this other key component, another chronic condition to add to my list, what can I do to help my eating routines that will help my body when I'm going through these kind of hormonal challenges? And so I just think it's also really important to give yourself grace. 

37:09
Gigi Robinson
I think the routine thing is, from what I've heard, from what the doctors have said, from even just waking up at the same time for a week or not eating gluten and dairy for a week, it's like you just feel better, but it's okay if you slip up. You're allowed to slip up. It's okay. We're still human. If weren't slipping up, we would be robots, and we're not robots. 

37:30
Jennifer Milner
That is very true, and I know that you have learned so much about yourself and how to take care of yourself and advocate for yourself along the way. And at the same time, you are very open about your support team and having people around you who can help you with that. Is there advice that you would offer loved ones and caregivers of people with chronic illness. Like, what would you want people to know about walking along like you? 

37:52
Gigi Robinson
Yeah, this is actually a great question because I've been talking about this with one of my friends who not only do they have a chronic health issue themselves, but their family member also does to the point where one, it's like this family member completely can't even work versus my friend functions. It's like a lot of times I think I have done my best to do it all and I feel like I don't want to burden anyone else with my health issues or make myself feel like it's too much. I already have to walk red carpets and go on camera and get interviews with people that are broadcasted. And for some people, that's already too much. And that's okay, you don't have to be everyone's cup of tea. But when it comes to health stuff, that's something that really can't be changed. That's something that either someone's going to be an asshole about or they're going to be tolerated. 

38:55
Gigi Robinson
They're going tolerate it, or they're going to go above and beyond because they just want you to be able to do what you do best. They want you to be taken care of so you can focus on shining your light. And that's a new perspective that I didn't have before. I've always been like, I'm too much. Why would anybody want to deal with this? And that's based on certain experiences I've had with friends and little fun, little adventures here and there with people. And it just has never been something where I felt taken care of and appreciated despite living with health issues. And so I just think having an open mind and just knowing that you aren't too much and caregivers, I think asking questions like, is there anything I can do? And then not kind of like the worst thing would be to lord that over someone's head. 

39:47
Gigi Robinson
To be like, well, I help you when you are sick. That's like the worst. That's the worst. But to anyone living with the health issues be unafraid to ask actually, you know, what, would you be able to bring me some tea or an ice pack? That would actually be really helpful. It can be little things. And I just know I personally have really appreciated people being there and offering the help, but also reciprocating it if I ask them to do something. And that's just been really a pivotal realization as I've kind of grown up. And it's been really hard for me personally to get to this point where I'm 24 and some people will say, oh, that's young. Some people say, oh, that's old. But I've always felt right. I've always just felt this old. To learn this lesson sorry, is just I felt like my illness is a burden, especially in new relationships, friendships, workplaces. 

40:55
Gigi Robinson
And I've learned that if there's ever a time where I feel like I should say something about my health, then it's the right time to do it. There's no right time other than that which you feel is right. And usually when that happens, it'll give me two answers. One of two answers. It'll give me the answer of somebody's an asshole, and they're probably not someone I need sincerely or somebody's amazing. And I'm super appreciative that they're willing to go above and beyond to help me. So those are kind of like my insights on those situations. 

41:32
Jennifer Milner
Well, that's great insight. I know a lot of us feel like our illnesses are a burden with our chronic illnesses. And I love what you said about finding those caregivers or friends or loved ones who want to do whatever they can to support you, but also want you to do what you need to do so that you can shine your light. And it's the people who understand, oh, you can't go out with me tonight. 

41:52
Gigi Robinson
Okay? 

41:52
Jennifer Milner
I will not guilt you into it. I won't make you feel bad. I won't say, how come you went out with so and so last week but you won't go out with me this week? Well, I had more students last week, right? 

42:00
Gigi Robinson
Yeah. 

42:00
Jennifer Milner
And I haven't done my dishes yet, so I have no more students. So yeah, that's really wise to see it that way. 

42:09
Gigi Robinson
And it's really hard when it's fresh or it's new or in college when you're just figuring out how to live on your own or how to pay your rent or how to keep going to school and make sure you're going to your doctor's appointments. And the hardest one for me was friends didn't understand why couldn't go out. And so instead of continuously being like, oh, well, would you want to do this instead? It was like, oh, well, we're just going to completely stop hanging out because the only thing we do together is go party, and you can't party anymore, and because you can't party, then our friendship is over and you're a bad friend for not supporting me and going out. And that's a really shitty feeling and not internalizing that. That was somebody else's judgment of who I am and where I was. And it's taken processing and talking about it to realize that. 

42:58
Gigi Robinson
And it's just like you're not alone, isn't it? And I think a lot of people go through that. 

43:03
Dr. Linda Bluestein
And I think it's really important to recognize that for some people, their supportive relationships are going to come from within their family, but in other cases, it's not. So I think a couple of things about that I often will tell people. Number one, you may need to love your family from afar if lots of people have grown up in family situations that were pretty challenging. And so maybe some separation for some people is actually healthier than keep trying and trying and you may or may not get the support that you're looking for from that person. And so building a supportive network of not just healthcare professionals, but also other people. And I love what you said about being appreciative too, because that's the other thing is everyone has something, right? We're all dealing with stuff. So I think it's really important as a person with chronic illness, as you're developing maybe relationships that are outside of your family, but to show that appreciation and reciprocate where you can and that kind of thing, because we all have individual needs and we're entitled to that. 

44:02
Dr. Linda Bluestein
And I see some people expecting their spouse to be everything for them. I think those things can be tricky. 

44:12
Gigi Robinson
And something that kind of scares me from threads and from talking to people. Even hearing that reaffirms that this exists, which I feel like you might know what I'm about to say, but that savior complex of a spouse who does all the acts of service and then kind of gaslights you when you can't reciprocate that is probably my biggest fear. I have no reason to truly believe that this would happen to me, but I've seen it happen to friends and I've seen them go through that and it just hurts. And I think sometimes it's better to not involve myself in situations than to feel that kind of hurt or betrayal from somebody who you might be like, I thought they loved me. And it's like it might not be that they didn't love you, but they thought that they could nurture you back to health. 

45:00
Gigi Robinson
And we sure know that with Eds or Endometriosis or other chronic health issues, sometimes you can outgrow them, sometimes they're lifelong and you don't know. You just don't know. And so I think at 24, thinking about this, it scares me a lot. And it's just been hard because I've also dealt with this in friendships. It's like, oh, well, I made you dinner this one night and you can't come out with me. 

45:31
Dr. Linda Bluestein
Yeah, I know that is hard. And that savior complex is a real thing because I work with a lot of parents of ill children. I work with a lot of couples. I've done a fair bit of couples counseling and that kind of thing. Whether it's parents or loved ones in general, if you can be more emotionally neutral, it's better than when you are too smothering or negative and belittling the person. Obviously it kind of is logical, of course. But in general, if you can be trying to take the emotion out of it and be more factual about maybe the person might say, I really need to get out of the house because I need some time for me. But to not say it in a nasty way or like you're saying about the friends and guilting and that kind of thing. I think those are excellent points that you're raising. 

46:16
Jennifer Milner
Yeah, well, we have covered so many things. Is there anything that we didn't cover that you wanted to make sure that we touched on? 

46:22
Gigi Robinson
I mean, I think this has been a really fabulous conversation, and like you had just said about even just validating and hearing that you've talked to so many parents about this, I mean, that's just a sign to. 

46:41
Jennifer Milner
What'S the thing? 

46:42
Gigi Robinson
Like, after a war, they raise the flag to call it's like, we're done. Yeah, but exactly. It's like, we need to realize that it's not all on the patient. There's a lot of coaching and guidance that could be done for caregivers, and I think it has to do with emotional intelligence. It has to do with just being a good person. I mean, there's so many things that go into it, but overall, there's a lot that still needs to be done. And that's where I think I come in as an advocate, where I have my lived experience, and I'm able to kind of say, here's what worked, here's what hasn't worked. And I can come to people like you who is a licensed professional. I can say, well, what is something that we can give as a takeaway with not necessarily medical advice, but more credible than your average patient that you might be talking to? 

47:35
Gigi Robinson
I think that's another fear of mine at times where it's like, people are like, why are you advocating for mental health or for chronic health issues? Like, you're not a doctor. And I'm like, you don't have to. Like, everyone has something you don't. 

47:47
Jennifer Milner
And it's great that you differentiate. Bluestein dr. Bluestein is an expert medically in these fields, and I am an. 

47:54
Gigi Robinson
Advocate medically in these fields, and I. 

47:56
Jennifer Milner
Don'T pretend to be an expert. Exactly. And then I'm an expert in the Pilates sessions, and she's an advocate because she knows what it feels like on her yeah. 

48:05
Gigi Robinson
As a patient. And it's like, we should just all work together to make everybody feel less alone in their journey of their chronic health and hopefully help them in the way that they're living their life. So, yeah, that's what I have to say. It was really such a pleasure talking to both of you. 

48:23
Jennifer Milner
Well, it's been fantastic speaking with you, and I think what we said earlier about hitting that Eds wall, it's like, you never hit the wall, but life gave you a lemon, and you're like, oh, I'll make lemonade, and life gives you another lemon, and you're like, oh, I'll make lemon cello. And then you get walk around these baskets of lemons, and the more lemons you get, the more different things you're making. And you're feeding all of these people. It's really wonderful how you have just continued to turn outward with it and use your experiences. If people want to learn more about you, want to listen to what you have to say, where can they find you? 

48:54
Gigi Robinson
Yeah, thank again. Like, I love that, and I love lemon pound cake and lemon coffee seed muffins too. So you're not far off there, but you can Google me, Gigi Robinson. You can find me at the at, symbol the word it's and then Gigi Robinson. So it's Gigi Robinson on all social platforms and my website is gigrobinson.com. Podcast is everything you need is within. And yeah, that's available streaming anywhere, everywhere. And so if you have a question or you enjoyed always, I always like the feedback and hearing back from people. So, again, it was just so incredible to chat with you. Thank you. 

49:30
Jennifer Milner
Awesome. Thank you. 

49:31
Dr. Linda Bluestein
I just wanted to say how much I enjoyed chatting with you, Gigi, and you're such an inspiration, and I love the name of your podcast. I think that's truly brilliant. And I think so many of us, we start looking outward for solutions to things and I think that we have so much more control over ourselves than over anything else. I think that's just wonderful and so grateful to you for coming on the yep, yeah. 

49:57
Jennifer Milner
Well, you have been listening to Bendy Bodies with the Hypermobility MD, and our guest today was Gigi Robinson. Gigi, thank you one more time for coming on the show and sharing your story with us. If you love what you learned, follow the Bendy Bodies podcast to avoid missing future episodes. Screenshot this episode. Tagging us in your story so we can connect. Our website is WW bendibodies.org and follow us on instagram at bendybodies. We love seeing your posts and stories, so please tag using hashtag bendybodies. Please leave a review and share the podcast to help us spread the word about hypermobility and associated conditions. This information is not intended to diagnose, treat, cure or prevent any disease. The information shared is for educational purposes only and is not a substitute for medical advice, diagnosis or treatment. Please refer to your local qualified health practitioner for all medical concerns. 

50:53
Jennifer Milner
We will catch you next time on the Bendy Bodies podcast.